Health disparities and the limits of patient advocacy

It’s not really breaking news that health disparities in the study and treatment of women, particularly regarding women of color, persist. Heart disease, for example, is the leading cause of death among women, and yet few get the preventative care that they need. Cardiovascular disease affects 44.7 % of black women, compared to just 32.4% of white women. This discrepancy is chroncially understudied.

One of the biggest investments in studying “lady stuff,” as it’s been thought of among traditional scientists and doctors for too long, is The Women’s Health Initiative, a $625 million study that has looked at that trickiest of all tricksters, menopause, and the many ways of making it less unbearable for women coping with it. More than 160,000 women have been involved since the study launched in 1991.

The results of this highly promising endeavour, however, have been contradictory, confusing, and often the source of alarm. As many will remember, in 2002, researchers announced that a common combination of estrogen and progestin proved harmful, increasing a woman’s risk for heart problems and breast cancer. Women, understandably, freaked out. As time went on, other researchers argued that the initial findings had been reported on in too blanket a manner, and actually the effects of the combo estrogen-progestin weren’t bad for women of specific age ranges. Most recently, The New York Times reports, “The Journal of the American Medical Association reported that certain woman who used only estrogen during the study had markedly reduced risk for breast cancer and heart attacks.”

Um, confusing much scientists? The Times explains why the confusion might not be such a bad thing:

The fact that women are frustrated by the twists and turns the study has taken, and possibly more skeptical about the drug industry, may be a good thing, said Dr. LaCroix.

“If women are more skeptical then I think that’s a good outcome,” said Dr. LaCroix. “We have a history in our country of wanting to believe that if we take a pill, we can prevent bad things from happening to us, and wanting to take those pills before the evidence comes in.”

The most compelling lesson of the research should be that science is always worth the wait. Consumers should insist that doctors make recommendations based on scientific evidence, say investigators, rather than allowing drug companies or marketing hype to dictate patients’ health care choices.

Patience, I can understand. Clearly we live in a world that wants quick fixes rather than long term, sustainable solutions. But there is so much tied up in this innocent looking little sentence: “Consumers should insist that doctors make recommendations based on scientific evidence.” The capacity to find a doctor who is knowledgeable about the scientific evidence, much less willing to sit down long enough with you to explain it, and further still, to be comfortable advocating for yourself with a doctor are all big, important IFs, influenced by economic class, social sphere, comfort level with authority and advocacy. All of these interactions are socially constructed, and putting the blame all on the patient, it seems to me, missed the point about the ways in which systemic oppressions show up in the doctor’s offices just as it does in the classroom and courtroom.

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